Tag: couples

‘The world was going through what we go through everyday’: The experiences of women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the United Kingdom

Abstract:

Objectives: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom.

Design: The study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA).

Methods: Participants were women with ME/CFS (n = 21) recruited through ME/CFS support groups in the United Kingdom. All participants were in romantic relationships and lived with their partners.

Results: Data were organised into three themes: (1) lockdown disrupting routine, (2) reducing difference and (3) fear of getting COVID-19. People with ME/CFS found that lockdown disrupted their well-established routines. Although routines were disrupted by partners and increased working-from-home practices, participants found having partners at home helpful. People with ME/CFS believed that the changes induced by the pandemic reduced the differences between themselves and the outside world which, prior to lockdown, had felt prominent. They were fearful of getting COVID-19 as they believed this would make their ME/CFS worse. This meant that for people with ME/CFS, the lifting of the lockdown restrictions was an anxiety-provoking time, hence impacting symptoms. People with ME/CFS continued to adhere to government guidelines after national restrictions were eased.

Conclusions: This study outlines the experiences of women with ME/CFS during COVID-19, alongside the long-term impact this has had due to the changes that the pandemic imposed. These findings may have implications for those with long COVID.

Source: Sehmbi T, Wearden A, Peters S, Dienes K. ‘The world was going through what we go through everyday’: The experiences of women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the United Kingdom. Br J Health Psychol. 2024 Mar 6. doi: 10.1111/bjhp.12717. Epub ahead of print. PMID: 38448223. https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12717 (Full text)

Relationship satisfaction, communication self-efficacy, and chronic fatigue syndrome-related fatigue

Abstract:

RATIONALE: Relationship dissatisfaction has been linked with worse health outcomes in many patient populations, though the mechanism(s) underlying this effect are unclear. Among patients with chronic fatigue syndrome (CFS) and their partners, there is evidence for a bi-directional association between poorer relationship satisfaction and the severity of CFS-related fatigue.

OBJECTIVE: Here, we hypothesized that relationship dissatisfaction negatively impacts fatigue severity through greater depression and less patient satisfaction about communication about symptoms to partners.

METHOD: Baseline data were drawn from diagnosed CFS patients (N = 150) participating in a trial testing the efficacy of a stress management intervention. Data derived from fatigue severity (Fatigue Symptom Index, FSI), depression (Center for Epidemiologic Survey-Depression, CES-D), relationship quality (Dyadic Adjustment Scale, DAS) and communication satisfaction (Patient Symptom Disclosure Satisfaction, PSDS) questionnaires were used for bootstrapped indirect effect analyses using parallel mediation structural equation modeling in Mplus (v8). Age and BMI were entered as covariates.

RESULTS: Greater relationship satisfaction predicted greater communication satisfaction (p < 0.01) and lower CES-D scores (p < 0.01), which in turn were each significantly related to greater fatigue severity (p < 0.05). Tests of the indirect paths indicated that relationship satisfaction had a significant effect on fatigue severity through both constructs, but primarily via depression. There was no direct association between relationship satisfaction and fatigue severity after the intermediate variables (depression, communication satisfaction) were included in the model.

CONCLUSION: Results highlight the importance of considering depression and communication-related factors when examining the effects of relationship satisfaction on CFS symptoms such as fatigue. Further mechanism-based, longitudinal research might identify relationship-related mediating variables that can be targeted therapeutically.

Copyright © 2019. Published by Elsevier Ltd.

Source: Milrad SF, Hall DL, Jutagir DR, Lattie EG, Czaja SJ, Perdomo DM, Ironson G, Doss BD, Mendez A, Fletcher MA, Klimas N, Antoni MH. Relationship satisfaction, communication self-efficacy, and chronic fatigue syndrome-related fatigue. Soc Sci Med. 2019 Jul 16;237:112392. doi: 10.1016/j.socscimed.2019.112392. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31377502

Love Means Never Having to Say … Anything

By Jamison Hill, New York Times, May 25, 2018

After dating Shannon for several months, I needed to say something to her, but I couldn’t. It’s not that I was nervous or unsure of the phrasing. It’s that I couldn’t speak. My lungs and larynx couldn’t create the air pressure and vibrations needed to say the words floating around my mind.

This is our reality. I can’t talk to Shannon about anything — not the weather or her day or how beautiful she is. Worst of all, I can’t tell her I love her.

You can read the rest of this moving essay HERE.

_____________________________

About the author: A graduate of Sonoma State University, Jamison Hill is a former bodybuilder, model, and fitness instructor. He has written for, among others, The Washington Post, Men’s Journal, The Los Angeles Times, Vox, Quartz, VICE and The New York Times. Jamison appeared in the documentary, Forgotten Plague, and his story is featured in an upcoming Netflix documentary about mysterious diseases. He writes about living with Chronic Fatigue Syndrome and Lyme disease at JamisonWrites.com. Jamison is currently finishing his memoir, When Force Meets Fate.

Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study

Abstract:

OBJECTIVES: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to chronic fatigue syndrome/myalgic encephalomyelitis.

METHODS: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data.

RESULTS: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world.

CONCLUSIONS: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a ‘significant other’ perspective.

 

Source: Brooks J, King N, Wearden A. Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study. Chronic Illn. 2014 Mar;10(1):5-17. doi: 10.1177/1742395312474478. Epub 2013 Apr 12. https://www.ncbi.nlm.nih.gov/pubmed/23585635

Psycho-physiological impact on women with chronic fatigue syndrome in the context of their couple relationship

Abstract:

The quality of dyadic adjustment is likely to play an important role in patients’ relational problems and may also be associated with the clinical presentation of chronic fatigue syndrome (CFS) symptoms. The objective of this study was (1) to determine whether CFS patients and their partners have similar perceptions of their dyadic adjustment and (2) to evaluate whether the influence of dyadic satisfaction in women with CFS, as well as common psychological parameters such as anxiety, may correlate with physiological responses at rest and/or when performing very low intensity exercise.

Forty females with CFS and their partners completed the Dyadic Adjustment Scale, the State-Trait Anxiety Inventory, and the Hospital Anxiety and Depression scale. The cardiovascular adaptation of patients was evaluated during resting conditions and on a precalibrated cycle ergometer while performing very low intensity exercise. Patients and partners had similar perceptions of their marital relationship.

Both at rest and during very low workload, various physiological parameters in the patient group showed statistical correlations with certain psychological parameters. Several psychological variables, such as anxiety and dyadic adjustment, were associated with the cardioventilatory response monitored at rest and during very low intensity exercise. Further studies are needed to determine the nature of this association.

 

Source: Blazquez A, Guillamó E, Alegre J, Ruiz E, Javierre C. Psycho-physiological impact on women with chronic fatigue syndrome in the context of their couple relationship. Psychol Health Med. 2012;17(2):150-63. doi: 10.1080/13548506.2011.582124. Epub 2011 Jul 11. https://www.ncbi.nlm.nih.gov/pubmed/21745025

 

Couples’ perceptions of wives’ CFS symptoms, symptom change, and impact on the marital relationship

Abstract:

The purpose of this descriptive correlational study was to describe the differences in couples’ perceptions of wives’ Chronic Fatigue Syndrome (CFS) symptoms and to describe the relationship between changing symptoms and the marital relationship.

The convenience sample of 131 wives with CFS and their spouses reported symptom changes similarly. However, wives reported significantly higher problem levels for constitutional, fatigue, cognition, central nervous system (CNS), musculoskeletal, and allergy symptom domains and significantly less problem levels of mood disturbance domain than their husbands.

Husbands who reported more symptom changes also reported lower marital adjustment, less empathy and support from their wives, and more conflict within the relationship. Wives who reported more symptom changes reported lower marital adjustment, less empathy for their husbands, and more conflict within the relationship and had husbands who reported lower marital adjustment and less empathy and support by the wives.

 

Source: Goodwin SS. Couples’ perceptions of wives’ CFS symptoms, symptom change, and impact on the marital relationship. Issues Ment Health Nurs. 2000 Jun;21(4):347-63. http://www.ncbi.nlm.nih.gov/pubmed/11249354